I became ill in 2001 and over 4 years saw 51 specialists that could not diagnose my illness. I was handed a Medline study from Christopher Reeves' Neurologist and was told to find the surgeon that performed that study. It lead me to Pittsburgh & Dr Peter Jannetta, Godfather of Modern Neurosurgery. He saved me from becoming a quadriplegic & worse. I never imagined I would develop multiple Rare Diseases at 31 yrs old, I had to learn to live a new limited life and the only way to start was with knowledge, then with helping others when I was well enough, and I have never stopped. I am a Leader in the Rare Disease Community, a Healthcare Activist, and Lobbyist. I have been fortunate to work with 1000's of Rare Disease Patients, Health and Disease Organizations and Foundations, Healthcare Stakeholders, and learned from them all. Now I try and improve Healthcare one day and project at a time.
Lead the Continuous Improvement program at a multi-national med tech firm. Teach powerful operational excellence methodologies, including designing systems focused on customer value, and training trainers for effective & broad standardization of best practices. Expert in coaching leaders & team members to develop skill in scientific problem-solving. Technical background in Quality Engineering & Mathematics.
Since 2012, collaborated with hundreds of healthcare professionals to drive favorable outcomes for my medically complex son. Experience includes thousands of hours spent in inpatient settings on both coasts of the US, and countless hours working to manage care at home. Through repeated success in the face of terrible odds, developed a deep passion for co-produced care leveraging the unique assets that patients/carers and professionals each bring to the table.
Eager to help any organization seeking to move in this direction.
I am a nurse and respiratory therapist. My daughter has a progressive heart disease and while being her healthcare support I have found myself being an advocate for many others. I am now doing this as a career. My mission is to be able to accompany the client through their illness or wellness to a meaningful experience.
Office visit companion
Care plan review and advising
Locating specialist for needed care
Audit medical billing and/or intervention as requested
Coordinate home care to aid in keeping client grounded in their environment
Evaluating facility needs if home care is not feasible
Acquiring durable medical equipment when applicable
Sunnie is a healthcare industry professional with expertise in launching products and building brands. She is passionate about leveraging technology to improve access to care, democratize information, and maximize the care experience for everyone. She is a registered dietitian with a Master’s degree in Human Nutrition and Foods.
Sunnie’s unique experience in creating, launching, and building products in health/ healthcare has resulted in opportunities to serve her community and humanity in roles such as: The US Department of Health and Human Services (HHS) Health Data Affiliate Program; Grant Review Chair for the Discovery Infrastructure for Clinical Health IT Apps Cooperative Agreement, Department of Health and Human Services, Office of the National Coordinator; and Subject matter expert on health innovation for the Academy of Nutrition and Dietetics 2016 National House of Delegates
Health Activist / Patient Advocate / Speaker / Patient Engagement / Brand Ambassador
Currently representing the Lupus community as the "Face of Lupus" for the International Pain Foundation.
My story "Living Well with Lupus" isa chapter in Jan Oldenburg's book "Participatory Healthcare" about patient engagement in today's healthcare system.
Presented at the 2016 "Connected Health Conference" for the "Patients as Innovators and Partners" panel.
The British Medical Journal published my article on the impact of Social Media in Patient Communities.
Represented the Lupus Foundation of America and the Lupus Research Institute as a empowered patient advocate on Capitol Hill.
Actively participated in advocacy in person & online.
Shared my story at #TEDMED on stage "Great Challenges" ambassador
Presented iat Lincoln Center on Community Engagement as a Brand Ambassador.
Moderated a panel of patient activists and shared my Lupus journey at the 92nd Street Y in New York City.
My passion is to write, research and share information to empower others in the multiple sclerosis community. I write for MultipleSclerosis.net, MultipleSclerosis News Today, and my personal blog InsideMyStory.com. My interests in MS research led to my role as a merit reviewer with the Patient Centered Outcome Reach Institute, and the DoD. I am associated with the Accelerated Cure Project for MS and the PCORI funded Patient Powered Research Network (PPRN) and I serve as the Lead Patient Representative and Chair of the iConquerMS™ Governing Board.
I take pride in disseminating credible information to my communities whether it be in small in-person or one-on-one conversations, online within patient forums, through Facebook groups, or at national conference presentations. Knowledge is meant to be shared and I am fortunate to be afforded the opportunity to do so. I remain open to new ideas and opportunities for advocacy work and patient representation in all areas of the MS community
I am a patient, advocate for OA,& AvascularNecrosis/Osteonecrosis. Being diagnosed in 2014 set me on a different path than being an optometric tec and apprentice optician.
After I had to hang my white lab coat up a lot sooner than i would have liked was very hard for me as I loved seeing patients , helping them.
But having avn in knee as well as OA and spondylolisthesis in my l5 s1 and factor v leiden I set out on a new journey
That new journey was becoming a group founder of my support group for avn/on.
I found many could not find doctors knowlegeable in this rare disease, so i set out to call doctors in every state to see what orthos were experienced in avn and also thought out of the box as far as treatments vs just waiting until a patients bones collapsed and then giving them a joint replacement ..I also wrote a booklet on avn/on I give to our members free
AVN/ON had no awareness ribbon so i created it also. I never want patients to feel as if they are in this alone .
I've been writing and consulting about diabetes for over eight years. After being diagnosed, in 2008 I started a comprehensive research project to understand how diabetes would affect me, my family and how I could also help others understand my findings. This led to starting four blogs all devoted to diabetes for kids, adults, seniors and even pets. At one time, we had over three million followers, a 6 day a week talk show on Blog Talk Radio for over two years and we received numerous awards and proclamations from the City of Clovis, California for our work online and in the community as it relates to diabetes. We also hosted a Livestream event for 4 years where we had over 250,000 attendees.
I'm a Chief Message Officer: a message maven who creates content strategy that tells the stories about the value you deliver in the marketplace. *My* biggest value: helping you find the funny in your B2B story, and using that humor to drive your message home.
I have a special interest in healthcare/healthcare tech, and have a big voice in the e-patient community. The World Health Organization tagged me as a patient engagement expert in 2014. If you're looking to drive better clinician/patient communication, I can help.
I advocate for all challenged with chronic pain as well as their family, caregivers, healthcare professionals & public. My speaking engagements, media interviews, and books on chronic pain inspire patient engagement filled with HOPE & motivation. I have been battling chronic pain since 1997. First with endometriosis. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), RA, hypothyroid, migralepsy, TMJ and more. My content creation offers practical advice, tips and tricks for better daily living and resolutions to the challenges of living with chronic pain. I have had a medical journey with twist and turns and now educate others on navigating the minefield of the healthcare system. I serve on multiple pain advisory boards and coalitions. WEGO Awards 2012 Ms Congeniality, 2016 Lifetime Achievement, 2016 Best Team Performance. For more information on me check out www.barbyingle.com
I am educated in Health Information Management with a minor in Human Services. My specialization is in mental health, but I also work with disabled students My current position involves mentoring and intake under the direction of a Licensed Mental Health Counselor. I have experience with movement disorders, mental health for first responders, FERPA and HIPAA. I also am a certified coder/biller. My main focus is to direct the individual to the proper resources which are available.
I am a freelance journalist specializing in researching and writing about health related issues. My interest in this field began when I was diagnosed with a little known chronic blood disorder (ITP) and had to do the research to find out exactly what I had. I am also a full-time caregiver for my disabled husband and have interviewed health professionals and other caregivers to succeed at this task.
I have used my skill at searching out answers to write articles for newspapers, blogs, websites, etc on various health related topics.
-women's health advocate
-empower women to navigate perimenopause & menopause with confidence and ease
-unbiased; while I share my own journey & experiences, I am not endorsed by a particular brand or modality
-product development: 30 years in marketing & communication
I went from pediatric cardiac patient to pediatric cardiac nurse, and somewhere along the way I was diagnosed with a slew of other diseases- systemic lupus (with many overlapping autoimmune diseases), cervical cancer, and had a double mastectomy after a pre-cancerous lump was found in my breast. Fun times.
When my nursing career had to be put on hold due to my deteriorating health, I began a new career as a patient advocate/influencer. I started my blog, Luck Fupus, in 2012, and have since used that as a platform to travel the country and share my (crazy) story, discuss hot button topics like patient centricity and transparency, and be the voice for patients. I've received scholarships to attend and speak at a variety of healthcare conferences including Stanford MedicineX, PCORI Annual Summit, MMM Transforming Healthcare, Patients as Partners and many more.
8 years of Registered Nursing experience in the following inpatient areas: Acute Care Medical/Surgical/Pediatric, Emergency Room in Level 3 and 4 Trauma Centers, Intensive Care, Labor/Delivery, Nursery, Post Anesthesia Recovery, Float Nurse, and House Supervisor. Also have experience in Home Health and Hospice Nursing.
Served as the nurse team leader for an electronic medical record implementation for a critical access hospital converting from all paper documentation. Responsible for building electronic version of the paper forms. Also responsible for training all end-users (Physicians, Nurses, and ancillary staff).
I have been home sick for 3 years with autonomic neuropathy, a rare disease, but still have nursing running thick in my blood. I am able to offer expertise in all of the above areas, as well as offering expertise in patient advocacy as well as numerous health conditions.
I have suffered with autoimmune illness, specifically rheumatoid arthritis, for over thirty years now. Since the age of nine, I have fought the illness and have both won and lost many battles. Joint replacements, deathly infections, and even a heart attack - I've seen and done it all. In this time, I have also written an autobiography, created a very successful blog, and I star in a short monthly podcast. I have become a valuable member of the online autoimmune and "spoon" community, and I am acquainted with not only patients but many doctors, professionals, and organizations as well. If you are looking for rheumatoid arthritis and/or autoimmune illness expertise, look no further.
Ken Taylor has be a caregiver since 2003 for his wife who has multiple chronic pain diseases. Ken is a former licensed insurance agent. Ken worked in the banking industry for 12 years at MCM, Bank of America, Wells Fargo, and Neiheisel Law Firm. Currently, Ken is a broadcast engineer for Dish Network. Ken also serves as the VP of the International Pain Foundation, is on the board of advisers for Pain Pathways Magazine, is the graphics editor for iPain Living Magazine. Ken serves on several pain advocacy coalitions including the Consumer Pain Advocacy Task Force and State Pain Policy Advocacy Network. He is an Amazon best selling author, motivational speaker, and Reality TV Personality sharing his story of caregiving and helping others better understand the healthcare system.
I am a professional speaker and author. I am frequently requested by medical/nursing associations to share my unique story to help medical professionals better understand the patient's perspective and techniques that can be best utilized to connect with a patient. Also, this summer I release a podcast entitled "People You Should Know". The vast majority of episodes will focus on a guest who is currently battling an illness or a patient who has overcome great odds. The podcast aims to not only raise awareness for unique research opportunities, but also to serve as an outlet for patient advocacy.
How I Am Interested in Collaborating with Companies:
-Presenting keynote presentations at internal or external events
-Endorsements on the "People You Should Know" podcast
-Patient advocacy panels
-Other creative collaborations
Kendra holds a BS in Public Health from the University of Maryland. She has extensive knowledge on the complexities of living with chronic medical conditions & lifestyle management strategies from working in pharmaceutical & medical sales, through the development and implementation of various health education programs, through medical writing & publishing. Kendra has been active in the EDS community for over ten years. It was through Kendra’s life, and professional experiences, that she founded EDS Wellness, including Wellapalooza Integrative Wellness Conferences (& retreats!), Moving Naturally w/ Hypermobility Seminars, “Just 5 Minutes,” "Invisible Strength," & the EDS Ride for a Cause.
Kendra is the Executive Director & Founder, EDS Wellness, Inc. She also started 2 other small businesses -- one in medical sales and one in book publishing. She is a Certified Health Education Specialist (C.H.E.S.), a 200hr Certified Yoga Instructor and Restorative Exercise Specialist.
As someone who survived a sudden cardiac arrest and was flatlined for approx. 34 minutes, I have interest in assisting health systems in creating environments that engage patients (and care-givers), and health care providers to create a culture of curiosity to solve some of the most thorny problems facing healthcare. A particular expertise can help in asking questions in cardiac rehabilitation and how we might raise awareness and increase participation.
I've also developed a number of presentations and have received positive feedback from speaking at local and national conferences including at the University of Michigan and Medx conference at Stanford.
Finally, with a Phd in higher education and a 30 year career as a practioner and teacher, I am now working to find ways to co-create curricula in med school and other graduate health programs that is created by patients, taught by patients and hopefully reinforces the reasons why students are studying health.